WP1 Project management and investments
Management, coordination, development of the organization and coordination of investments.
- Organizing leader group meetings and reports on Biobank Norway to the Research Council of Norway (RCN) and other stakeholders
- Participates actively in the European biobank infrastructure BBMRI-ERIC and other international biobank initiatives
- Organizing national and international conferences on biobanking
- Communicates actively with the public and biobank donors through our web site and other initiatives
- Organizing tender procedures for major investments planned for BN2
WP2 Prospective clinical research biobanks
The sample tracking system achieved in BN1 will be continued. In BN2, high quality, large, prospective research biobanks in the health care sector will be prioritized in such a way as to ensure optimal handling and storage for future research. We will establish a model for disease-specific prospective biobanks that can be utilized in all health regions, with consensus on SOPs pertaining to sample handling and storage, staff competence, equipment and IT-infrastructure. WP2 will adapt and expand on the work from the prostate cancer pilot in WP3, as well as on the implementation of the minimal dataset initiated in BN1 and taken further in WP6.
- Establishment of at least one prospective clinical Biobank at three of the university hospitals
- Establishment of an electronic platform for obtaining consent
- Establishment of a searchable electronic consent registry
- Establishment of a biobank portal for patients and researchers at least at one university hospital
- Accessibility of SOPs, consents etc. for future initiatives
- Barcoding of the samples in the Janus Serum Bank
- National guidelines for access and costs of samples for research
Final report from WP2; Recommendations for Prospective Clinical Research Biobanks:
WP3 Multicentre biobanking
Implementation of a national pilot for collection of tissue samples by common protocol;
- Evaluation and description of ethical, legal and regulatory requirements for the multicenter approach in collaboration with CS2
- Development of organizational framework for decision, description, deployment, and evaluation of consensual operating procedures for collection, storage and further management of various types of human material and data in multicenter biobanking
- Establishment of a system for the acquisition, recording and storage of information about the samples and their donors using a common web-based database solution
- Evaluation of how data can be efficiently exchanged between research projects and the Cancer Registry using existing platforms, within existing laws and regulations
- Establishment of a national generic data warehouse for access to FFPE pathology samples through one common portal
Description of work/tasks:
- Integrate solutions for data access on current IT-systems for secure data-management
- Integrate solutions for analysis on established software
- Integration of Norwegian driven tools and platforms (Haplin, GenABEL, Galaxy)
- Further development of Haplin, programming in R.
- Provide technical and methodological support, help desk and arrange analysis workshops
WP5 Communication with health study participants/data donors
Description of work/tasks for WP5:
- Develop a «My page» privacy preserving information platform for personal feedback to data donors, accessed through the helsenorge.no – website
- Develop and test various consent solutions for data donors to biobanks and population studies, available for data donors at the “My page” platform
- Implement the “My page” platform for HUNT/NTNU and Tromsø Study/UiT as test cases
- Form a sustainable organization around the “My page” platform
WP6 Biobank Registry
WP6 will maximize the research value of the Biobank Registry by including updated information on all existing biobanks, and further develop the Biobank Registry and prepare for integration with Biobank Inventory and minimal common dataset from clinical biobanks.
We will develop data architecture, source codes and security scheme for a Biobank Inventory, and present the overall concept for the Data Inspectorate and REC for a general orientation and preliminary approval. In collaboration with the Bioinformatics group at the Danish National Biobank, we will involve our own bioinformatics resources in programming and development of the system.
Improved access to registry data
Together with Health Register for Research (HRR), and RCN, we will initiate and establish working groups with participants from all major registry owners, both on a technical and strategical level, to find new solutions for better use of registry data. And we will present a first version of a technical solution for data retrieval from multiple registries.
WP7 National platform for sequencing studies
WP7 will coordinate the various infrastructures needed to perform sequence based studies involving the biobank resources of Norway, by establishment of
- A coordinated service pipeline that provides users services in all aspects of sequencing studies in a cost-efficient way
- A framework for data sharing of sequencing data that handles privacy issues in accordance with national data protection legislation
WP8 Innovasjon / industrisamarbeid
The primary goal of WP8 is to contribute to the development of a sustainable national model and a framework that will promote innovation and industry R&D collaborations on the basis of Norwegian biobanks. WP8 will monitor and engage in governmental initiatives on the area of health data, such as the "Helsedatautvalget" and the national Health Data Program and the Parlamentary white paper on biobank.
The overriding and long-term goal is for Norwegian biobanks and associated research groups to engage and facilitate innovation and industry R&D collaboration and by doing so contribute to, and accelerate, the development of new diagnostics and therapies.
In addition, the work package aims to make a subset of high-quality biobanks better prepared for industry research collaborations. This work includes a thorough mapping of the opportunities and barriers for each biobanks related to industry collaboration and includes informed consent, inventory of samples and data, agreement templates, guiding principles and information material that can be used in dialogue with the global health industry.
Policydokument for innovasjon og næringsrettet forskningssamarbeid for norske biobanker. Ny versjon vedtatt av Biobank Norges ledergruppe 27.11.2017.
Presentations of selected high-quality biobanks
- The Norwegian Primary Sclerosing Cholangitis Biobank (NoPSC)
- NORMENT and the TOP biobank
- The Multiple Sclerosis Registry and biobank
- The breast cancer biobank network OSBREAC and the OSLO-2 breast cancer cohort
- The Prospective Breast Cancer Biobank (PBCB)
- The Prostate cancer biobank at OUS
- The Multiple Myeloma Biobank
- The Mother and Child cohort study (MoBa)
- The HUNT study
- The Janus serumbank for Cancer
- The Tromsø study and biobank
Common Service Biobanking has established a biobank help desk, and organizes disseminated services such as:
- Sample handling
- Quality management
- Technical solutions
- Lab ware
- DNA and RNA extraction, quality studies
- LIMS/Data base solutions
- Biobank constructions/establishments
- Energy consumption and recycling
BN CS ELSI – BIOBANK NORGES ETIKKRÅD
Hva gjør vi?
- Vi bidrar til å sikre optimal bruk av norske forskningsbiobanker med en høy etisk standard
- Vi arbeider for å fremme offentlig engasjement rundt bruken av norske biobanker
- Vi bidrar til at arbeidet i Biobank Norge utøves i tråd med juridiske og samfunnsmessige krav
- Vi rådgir biobankforskere og institusjoner i forhold til etiske utfordringer
- Vi utvikler verktøy, retningslinjer og informasjonsmateriell som hever bevisstheten om viktige etiske utfordringer ved biobankforskning
- Vi undersøker forskeres og deltakeres holdninger til etiske spørsmål ved biobankvirksomhet
Hvilke sentrale spørsmål er vi opptatt av?
- Bør biobankdeltakere gis anledning til å få tilgang til individuelle genetiske forskningsdata?
- Hvordan bør en beskytte personvernet til biobankdeltakerne når data deles med forskningsmiljøer i andre land?
- Hvilken etiske utfordringer dukker opp ved et tettere samarbeid mellom offentlige forskningsbiobanker og legemiddelindustrien?
- Hvilken rolle bør biobankdeltakerne ha i å påvirke utforming og gjennomføring av forskningsstudier?
- Hvordan utvikle samtykke- og kommunikasjonsformer som sikrer deltakernes interesser og gir god forskning?